This year was so totally different from all of the previous family gatherings. Mom moved to the memory care unit on Saturday before Thanksgiving and was settling in. This awful disease has really taken hold of her over the last few months and we have seen a steady decline. It is hard to get a smile out of her but every once in a while we see 'our' mom as we remember her. We talked with several people and they thought it was best that she stay in the memory care unit on Thanksgiving and not come to house of 18 adults and 3 children under 5. It was certainly a 'tough' day but a few of us did go see her after lunch and took her some desert. The unit currently has 16 residents and 10 of them stayed for the holiday. That was my biggest fear.....that mom would be there with two or three others and the rest of people would be away. Making me feel like a total failure....thankful that was not the case. Mom seemed happy to have some company although she did not know who we were. She seems much happier in the new unit with the more structured feeling. The people who work there are awesome and I don't think we could ask for a better place. After all dad has been through over the last 6 months, he was able to come for Thanksgiving for a trial run at home. So far he has done well and will likely come back home to live. We are going to give him a few more days at home before we give his notice.
Alzheimer's is slowly taking the mom I knew away....a little bit at a time. It is sad to remember how vibrant she used to be and to see her the way she is now. It is still mom but she does not recognize family members and sometimes can not follow the conversation.....often we just sit and listen to her talk. Visiting her is still so important and I cherish each moment we have together. The next big holiday will probably bring lots of tears as we get closer to Christmas. My daughter will be coming home from Texas and it will be the first time she has seen her Meme since last Christmas. It is a drastic difference in just twelve months.
Savor each moment with your family, you do not know what tomorrow will bring. I know what the future holds for mom and this disease and I know WHO holds our future. Thank you Lord for our memories that we can cherish. Love you Mom.
Mother's Day 2011
Tim, Mom, Nancy & Diane
Saturday, November 30, 2013
Friday, September 20, 2013
Alzheimer's Awareness Month
This is Alzheimer's awareness month.....what does that mean to you? To a family deep in an Alzheimer's journey, it means there is never enough publicity for this awful disease. It seems that no one cares....there is funding for cancer, ALS, and many other diseases but Alzheimer's is for old people why fund it?...WRONG! There are many 50 something's and even 30 and 40 something's being diagnosed with Alzheimer's. AND THERE IS NOTHING TO STOP THIS DISEASE....there is no prevention, no cure and drugs only slow it down for a little while. Some people have success with drugs or a combo of drugs and with some people there is no way to slow down the tidal wave of the disease.
Recently, mom fell and hit her head while brushing her teeth....she just stumbled and fell. The assisted living facility has a rule, if they hit their head they must go to the hospital to be checked out. She did have a nasty lump on the back of her head and she did complain that her neck hurt, so off we went. HOWEVER a hospital is the worst place a patient with Alzheimer's can go. It literally throws most of them into a tail spin, mom got there and at first she was a model patient. My sister drew the short straw to stay overnight with her, my brother had to go to work the next morning and my husband is still recovering from a broken hip. I told Nancy I would be there to relieve her in the morning. They took mom for an xray and a CT scan and then tried to put a collar on her to stablize her neck. That was not going to happen....she fought the nurses and they decided to not force the issue. They came back to put in a catheter and that turned into a raging nightmare my sister wishes she could forget. They never got in the catheter. They did admit her to the hospital for observation. Because mom had gotten so upset over what the doctors and nurses were trying to do for her, she was keyed up and could not sleep. My sister had little if any sleep that night because mom was talking so much. When I got there in the morning she relayed what had happened overnight. When Nancy left, it started! She was so out of her normal routine and had no idea who I was or why people were trying to check her temp, her blood pressure, draw blood, look at her head to check the lump it was awful. They needed to put in an IV for fluids, that lasted about 15 minutes. She kept bending her arm setting off alarms so I finally asked them to remove it. Just bring me some water and I would get her to drink something. They promised a doctor would be around later in the day to dismiss her if all tests provided negative. Mom fought me tooth and nail over drinking water, she slapped my hand and soaked her hospital gown....they she started yelling that I had slapped her. She would not lay down in the bed but sat upright in the most uncomfortable hospital chair all day long. She paced the room and tried to go out the door but I would stop her and guide her back to the chair. She would want the door open, then she would want it closed, she thought the people in the hall were talking about her. At lunch she would not eat....she said they were trying to poison her. I ate some of her lunch and she told me in a very serious voice that I was going to die. A cardiologist tried to listen to her heart, she would have none of that. They ordered an echo and I told the nice tech she would not let anyone listen to her heart she certainly was not going to let him do his echo. I had my ipad with me and tried to get some gospel music on hoping that would help calm her. She grabbed it out of my hands and attempted to throw it across the room but I did rescue it and got on the music. Thankfully she started singing and did calm down, the nurse came in and asked her to get in bed and she finally agreed to get in the bed. The music lulled her to sleep for about 30 minutes. Then it started all over, the doctor fianlly came in for rounds about 5pm and by this time I was exhausted both physically and mentally. She wanted to keep her overnight again so they could check her pacemaker in the morning and be sure that was not the cause for her fall. She told the doctor that I was a mean cousin and had been so mean to her all day. The doctor told mom I will make sure she leaves....the doctor took me out in the hall and said she knew that I was her daughter and asked me if she had ever had these type of episodes before. I said once about 2 years ago when she was first diagnosed. I told her I knew it was the disease talking and not my mom. The doctor went back inside and told mom the cousin had left but that her daughter was her now, I went back in the room and mom said in the sweetest voice I am so glad to see you....can you take me home. She had turned into the mom I knew....the doctor did agree to get the pacemaker checked that evening and then we could go home. There is a book on Alzherimer's The 36 hour day, and I had just experienced it in the 10 hours I was at the hospital. All the tests were negative and mom was sent back to the assisted living facility that evening. She had a rough night sleeping that night because she had been running full steam ahead for 24 hours.
It is so hard to see your loved one so out of control and there is nothing you can do to stop the hurricane brewing inside of them. I pray that God is merciful and gracious with my mom as this disease progresses. It is never going to be any better and will continue to get worse. For those of you who do not have a loved one with Alzheimer's thank God every day. If you do have someone who is effected by this disease thank God for the good times you remember with them that they can no longer remember. It is a long journey and we just take it one day at a time. Thank you God for my mom and dad who raised me and my siblings in a loving Christian home. Mom sometimes does not recognize me but that is ok...I know who she is and love her dearly. Love, Diane
Recently, mom fell and hit her head while brushing her teeth....she just stumbled and fell. The assisted living facility has a rule, if they hit their head they must go to the hospital to be checked out. She did have a nasty lump on the back of her head and she did complain that her neck hurt, so off we went. HOWEVER a hospital is the worst place a patient with Alzheimer's can go. It literally throws most of them into a tail spin, mom got there and at first she was a model patient. My sister drew the short straw to stay overnight with her, my brother had to go to work the next morning and my husband is still recovering from a broken hip. I told Nancy I would be there to relieve her in the morning. They took mom for an xray and a CT scan and then tried to put a collar on her to stablize her neck. That was not going to happen....she fought the nurses and they decided to not force the issue. They came back to put in a catheter and that turned into a raging nightmare my sister wishes she could forget. They never got in the catheter. They did admit her to the hospital for observation. Because mom had gotten so upset over what the doctors and nurses were trying to do for her, she was keyed up and could not sleep. My sister had little if any sleep that night because mom was talking so much. When I got there in the morning she relayed what had happened overnight. When Nancy left, it started! She was so out of her normal routine and had no idea who I was or why people were trying to check her temp, her blood pressure, draw blood, look at her head to check the lump it was awful. They needed to put in an IV for fluids, that lasted about 15 minutes. She kept bending her arm setting off alarms so I finally asked them to remove it. Just bring me some water and I would get her to drink something. They promised a doctor would be around later in the day to dismiss her if all tests provided negative. Mom fought me tooth and nail over drinking water, she slapped my hand and soaked her hospital gown....they she started yelling that I had slapped her. She would not lay down in the bed but sat upright in the most uncomfortable hospital chair all day long. She paced the room and tried to go out the door but I would stop her and guide her back to the chair. She would want the door open, then she would want it closed, she thought the people in the hall were talking about her. At lunch she would not eat....she said they were trying to poison her. I ate some of her lunch and she told me in a very serious voice that I was going to die. A cardiologist tried to listen to her heart, she would have none of that. They ordered an echo and I told the nice tech she would not let anyone listen to her heart she certainly was not going to let him do his echo. I had my ipad with me and tried to get some gospel music on hoping that would help calm her. She grabbed it out of my hands and attempted to throw it across the room but I did rescue it and got on the music. Thankfully she started singing and did calm down, the nurse came in and asked her to get in bed and she finally agreed to get in the bed. The music lulled her to sleep for about 30 minutes. Then it started all over, the doctor fianlly came in for rounds about 5pm and by this time I was exhausted both physically and mentally. She wanted to keep her overnight again so they could check her pacemaker in the morning and be sure that was not the cause for her fall. She told the doctor that I was a mean cousin and had been so mean to her all day. The doctor told mom I will make sure she leaves....the doctor took me out in the hall and said she knew that I was her daughter and asked me if she had ever had these type of episodes before. I said once about 2 years ago when she was first diagnosed. I told her I knew it was the disease talking and not my mom. The doctor went back inside and told mom the cousin had left but that her daughter was her now, I went back in the room and mom said in the sweetest voice I am so glad to see you....can you take me home. She had turned into the mom I knew....the doctor did agree to get the pacemaker checked that evening and then we could go home. There is a book on Alzherimer's The 36 hour day, and I had just experienced it in the 10 hours I was at the hospital. All the tests were negative and mom was sent back to the assisted living facility that evening. She had a rough night sleeping that night because she had been running full steam ahead for 24 hours.
It is so hard to see your loved one so out of control and there is nothing you can do to stop the hurricane brewing inside of them. I pray that God is merciful and gracious with my mom as this disease progresses. It is never going to be any better and will continue to get worse. For those of you who do not have a loved one with Alzheimer's thank God every day. If you do have someone who is effected by this disease thank God for the good times you remember with them that they can no longer remember. It is a long journey and we just take it one day at a time. Thank you God for my mom and dad who raised me and my siblings in a loving Christian home. Mom sometimes does not recognize me but that is ok...I know who she is and love her dearly. Love, Diane
Monday, August 26, 2013
My how things change
It has been over 2 months since my last post and once again we have been on a fast track of change. Dad was in rehab, barely able to stay awake for his PT each day. We kept hearing, your dad was a really sick man and it will take a long time for him to recover. He finally began to be more awake after about a month in rehab. Our entire family (20+ people from as far away as Texas) meet in Florida for one glorious week of R&R each summer. Mom & Dad have always gone and the kids, spouses, grandkid, great grand kids....all meet in 4 condo's and just relax. This year we knew mom could not go and dad was in rehab trying to get better and he was not able to go. Do we cancel our trip or do we go and get some much needed R&R? If we went what do we do with mom? We were so torn and really had no idea what to do or what was best. We thought about taking mom with us but we knew that would not be the R&R we needed...she needs 24/7 care. We looked into respite care and visited several places. I can not believe some of the places we visited and how awful they seemed. We found a place that had room for mom but respite was a minimum of 3 weeks. Mom wanted none of that and had decided she was not going and wanted to stay at home by herself. We told her that she was afraid to be alone at night and she had no one to fix her meals while we were gone. Dad's PT was coming to an end at his facility and sure enough they discharged him from the facility the day before we left on vacation. He was able to stay at that facility as private pay and we had scrambled that week and were able to get him into an assisted living facility close to their home. He could move in the Monday after we returned from vacation. We took my mom to another assisted living facility for her respite.....she was so upset that we were leaving her there and she did not know anyone. It was an awful scene and heartbreaking. My sister and I left her that afternoon feeling like awful adult children.
We did have a very restful and relaxing week at the beach. Calling to check on both of them while we were away. Mom was not participating in any activities but just kept telling them she wanted to go home. Dad was fine but he was not doing his exercises on his own like he promised us he would. The weekend we arrived home we decided to go see mom but the facility told us it would be better not to visit as she would want to leave with us. We are so thankful that my sister had a friend who visited mom nearly everyday while we were gone and kept her company. Mom did not know her but loved having someone to talk to. When we returned we also started preparing mom for a move to the same facility with my dad but in her own room. About the time everything was in place for that move.....disaster struck. My husband fell down some concrete steps and broke his hip. Now I was out of the loop helping with the move and it fell on my brother and sister to handle it alone. They did an awesome job pulling together and getting it handled while I made my daily trek to downtown Atlanta to the hospital. Of course once he came home, it was still hard for me to do anything else other than care for him. Thankfully that is now 4 weeks behind us and he is doing well. He has progressed in his PT to learning how to use a cane this week. Still using a walker but learning how to use the cane.
Dad is still having PT but HE is ready to go home but still not physically ready to take care of himself at home. He feels he will be able to care for mom as soon as he goes home....we know that he will not be able to. Mom is on the wait list for memory care and dad does not understand why he can't take care of her and she will have to stay. She is adjusting slowly but is dad's shadow all day long. He would rather not participate in the 'silly' activities as he calls them but we tell him mom needs the stimulation. It is tough when both parents need some 'assistance' and neither parent wants it. We just keep plugging along and doing the best we can. We do not know what the future holds but we know who holds our future. God has been there with us all the way. Without Him, I would have probably fallen in deep despair.
PS---Yesterday afternoon my husband and I were out for a quick drive to the grocery store and were in a wreck. Thankful God's hand was on us and we were not hurt....the car has significant damage but it can be fixed.
We did have a very restful and relaxing week at the beach. Calling to check on both of them while we were away. Mom was not participating in any activities but just kept telling them she wanted to go home. Dad was fine but he was not doing his exercises on his own like he promised us he would. The weekend we arrived home we decided to go see mom but the facility told us it would be better not to visit as she would want to leave with us. We are so thankful that my sister had a friend who visited mom nearly everyday while we were gone and kept her company. Mom did not know her but loved having someone to talk to. When we returned we also started preparing mom for a move to the same facility with my dad but in her own room. About the time everything was in place for that move.....disaster struck. My husband fell down some concrete steps and broke his hip. Now I was out of the loop helping with the move and it fell on my brother and sister to handle it alone. They did an awesome job pulling together and getting it handled while I made my daily trek to downtown Atlanta to the hospital. Of course once he came home, it was still hard for me to do anything else other than care for him. Thankfully that is now 4 weeks behind us and he is doing well. He has progressed in his PT to learning how to use a cane this week. Still using a walker but learning how to use the cane.
Dad is still having PT but HE is ready to go home but still not physically ready to take care of himself at home. He feels he will be able to care for mom as soon as he goes home....we know that he will not be able to. Mom is on the wait list for memory care and dad does not understand why he can't take care of her and she will have to stay. She is adjusting slowly but is dad's shadow all day long. He would rather not participate in the 'silly' activities as he calls them but we tell him mom needs the stimulation. It is tough when both parents need some 'assistance' and neither parent wants it. We just keep plugging along and doing the best we can. We do not know what the future holds but we know who holds our future. God has been there with us all the way. Without Him, I would have probably fallen in deep despair.
PS---Yesterday afternoon my husband and I were out for a quick drive to the grocery store and were in a wreck. Thankful God's hand was on us and we were not hurt....the car has significant damage but it can be fixed.
Sunday, June 9, 2013
Our Journey continues
I have been slack writing this blog, we had gotten into a routine or a grove of sorts. Dad was taking care of mom....she had good days and and occasional bad nights but nothing that we could not handle together.
Don't ever get too comfortable with with your life's situation and caring for someone with Alzheimer's. Three weeks ago things changed FAST. Dad was admitted to the hospital with a severe UTI. Things went from bad to worse in the hospital. His heart rate was 170, his breathing was shallow, he was unable to walk and he was sleeping 90% of the time. He had to have a cardioversion to restore his heart rate to normal and he was put on oxygen. He had antibiotics for his UTI, but still dad did not bounce back. It seemed as if he had a stroke. Tests were done and it was determined he did NOT have a stroke. The doctors could only say he was very sick and it will take a long time for him to recover.
My sister, brother and I quickly became mom's 24/7 caregivers. She wanted to go to the hospital every day to see him. She would hold his hand, stroke his forehead and tell her that she loved him. Days before this happened she may or may not have known who he was. She is not able to stay by herself so my sister and I became the week day caregivers and my brother helped out on the weekends. Mom was doing well the first week or so but I believe this event is taking a toll on her. She has trouble remembering who my sister and I are and why are we taking care of her. She keeps wishing her daddy was here to tell her what to do.
Dad has now been moved to a rehab facility to increase his strength. Right now he is still unable to walk or sit up in a chair and he is still on oxygen. The visits have turned into a battle of wills, he wants to sleep and she wants him to wake up and talk. His morning is devoted to Physical Therapy so we have tried going in the afternoon and evenings but he is always asleep.
Alzheimer's disease is a horrible thing to experience with your loved one. We have seen our mom go from someone who 'did it all' to someone who needs our help every day with the simplest of chores. She keeps saying she does not want to be a burden, we reassure her that she is not a burden and we are proud to be able to help her out. Right now we have two parents to care for....one at home with Alzheimer's and one in rehab trying to regain strength to be able to walk and take care of himself at home. In my heart I don't think dad will ever be able to return to his duties as caregiver for mom. It seems more likely that we will have two parents to care for.
Our family clings to our faith in Jesus. From Jesus Lives by Sarah Young......"When unexpected events shake up your routines, rejoice. This is exactly what you need, to wake you up and point you towards Me." Psalm 63:8 My soul clings to You; Your right hand upholds me. I love you mom & dad.
Don't ever get too comfortable with with your life's situation and caring for someone with Alzheimer's. Three weeks ago things changed FAST. Dad was admitted to the hospital with a severe UTI. Things went from bad to worse in the hospital. His heart rate was 170, his breathing was shallow, he was unable to walk and he was sleeping 90% of the time. He had to have a cardioversion to restore his heart rate to normal and he was put on oxygen. He had antibiotics for his UTI, but still dad did not bounce back. It seemed as if he had a stroke. Tests were done and it was determined he did NOT have a stroke. The doctors could only say he was very sick and it will take a long time for him to recover.
My sister, brother and I quickly became mom's 24/7 caregivers. She wanted to go to the hospital every day to see him. She would hold his hand, stroke his forehead and tell her that she loved him. Days before this happened she may or may not have known who he was. She is not able to stay by herself so my sister and I became the week day caregivers and my brother helped out on the weekends. Mom was doing well the first week or so but I believe this event is taking a toll on her. She has trouble remembering who my sister and I are and why are we taking care of her. She keeps wishing her daddy was here to tell her what to do.
Dad has now been moved to a rehab facility to increase his strength. Right now he is still unable to walk or sit up in a chair and he is still on oxygen. The visits have turned into a battle of wills, he wants to sleep and she wants him to wake up and talk. His morning is devoted to Physical Therapy so we have tried going in the afternoon and evenings but he is always asleep.
Alzheimer's disease is a horrible thing to experience with your loved one. We have seen our mom go from someone who 'did it all' to someone who needs our help every day with the simplest of chores. She keeps saying she does not want to be a burden, we reassure her that she is not a burden and we are proud to be able to help her out. Right now we have two parents to care for....one at home with Alzheimer's and one in rehab trying to regain strength to be able to walk and take care of himself at home. In my heart I don't think dad will ever be able to return to his duties as caregiver for mom. It seems more likely that we will have two parents to care for.
Our family clings to our faith in Jesus. From Jesus Lives by Sarah Young......"When unexpected events shake up your routines, rejoice. This is exactly what you need, to wake you up and point you towards Me." Psalm 63:8 My soul clings to You; Your right hand upholds me. I love you mom & dad.
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